“I was like a woman at a drawer, putting away her party dresses between tissue paper, and there he stood in the doorway– not Stewart Applebaum, but this feeling– gentlemanly, feral, breathtaking, peaceful, something very close to life itself, asking me for one more dance down in the meadow.” Rebecca Lee, Bobcat and Other Stories
Getting older is strange. It’s equal parts liberating and stifling. It’s a round of “I do what I want” followed immediately by “I’m old enough to know better.” People look at you like you’re the adult in the room, and you are, even though you may reject their definition of what that means and the expectations that go along with it.
Every new change, whether it’s due to aging or sickness or just boredom, comes with packing away or throwing out the things that don’t fit anymore. Sometimes that feels good; sometimes it doesn’t.
Last Sunday, we celebrated a couple of birthdays by going to the goth club we used to frequent. It was my first time going to their new location, and I was nervous about whether I would like it.
I had fun. I missed the chandelier and the multiple bars spaced throughout the club and the second dance room. I had moments of sadness remembering people we used to see there who are no longer with us.
But the music was a great mix of new and old. There was something for everyone, which is one of the big things that drew me to the club back in the day. All the weird things we each bring to the table were welcome. Everyone can play. Just the way the world should be.
It was a good reminder that I’m not ready to pack away all the party dresses. I probably never will be.
As long as I have breath, I will dance through a thousand open doorways and out into the world.
“I have finally concluded, maybe that’s what life is about: there’s a lot of despair, but also the odd moment of beauty, where time is no longer the same. It’s as if those strains of music created a sort of interlude in time, something suspended, an elsewhere that had come to us, an always within never. Yes, that’s it, an always within never.” Muriel Barbery, The Elegance of the Hedgehog
Today’s post may be a little short. I’ve not been feeling well this week. I tried to push through, expecting my default version of taking it easy by going to work a little later and canceling a meeting or evening plans a couple of times would do the trick it usually does/used to do.
But no.
Last night I didn’t sleep a lot because I was up and sick with a fever and various other unpleasant symptoms. I finally admitted to myself around 4:00 that I wouldn’t be able to go in today at all.
I hate it. I’m so tired of being sick. It may be quite a while until I’m back to what I’m used to seeing as normal for me. The despair is so heavy at times that it’s almost a tangible presence.
I’m not much of a bright-sider, but I know that little touches of light and beauty are good tools to guide me out of the dark. Things like kind words from friends, the perfect cup of coffee, my favorite sweatshirt. My faith. My art. Constants that I can always depend on even when it seems like the bad things will never go away.
This year has been nuts. Even with a truly outstanding medical team and the rich support of friends and family, cancer made sure that I felt more like a pin cushion or an experiment than a person most of the year. -1,000/10. Strongly do not recommend.
Several things have saved me. I’ve never felt like I was in this alone. There has always been at least one person willing and able to accompany me (or drive me) to my appointments, treatments, and procedures. I have received so many gifts. I always suspected that if I had a specific love language, gifts would be it, and I think this year has verified that. I also have been fed and texted and encouraged and cared for in so many other ways. Even people I didn’t expect to think about me at all have come out of the woodwork to give a kind word, donate to GoFundMe, or offer much-needed wisdom.
Another way I’ve made it through is by honoring that I need regular quiet time for rest. Of course, this is true all the time, but it has been especially vital this year. When I chose quiet as my theme word for the year, I knew I had to pursue it intentionally. I figured it would mean that I would need to lay aside a lot of the things I do to keep busy – things that I genuinely enjoy but tend to cause me more stress than other responsibilities and practices. I expected a lot of FOMO.
Instead, I’m happy to report that my feelings on the matter have gone the other way. Apparently, JOMO is also a thing, and I have it. I enjoy seeing people, but when I can’t or when plans get canceled, the disappointment I feel in not getting to do the thing in question is often overshadowed by the absolute delight I experience in escaping several factors that often come along with it – the noise, the crowds, the germs, the commute, the cost, or simply the constant energy expenditure it takes to make sure I am projecting the right socializing/listening/personing face to match what is actually going on in my head.
I didn’t really mean for the year to be this quiet, but I’m also not upset about it. I love quiet so much.
One of my favorite practices that I’ve honed this quiet year is slowing down during my reading time. Part of this practice is practical. My attention span has been sparse(-r than usual) and I get tired more quickly, so slowing down has been necessary to even retain what I read. Another benefit of a slower pace is that it leaves room for jotting down meaningful quotes that stand out to me. These quotes have their own journal, and it’s the most consistent journaling I’ve done in a while.
This month, I want to let you in on a little part of it. I’m going to share a different quote each day that I’ve taken from the books I’ve read this year and write a reflection on it. I can see this becoming a regular thing here, but it’s daily during October.
I’ll catalogue the posts here for reference. Enjoy!
Welcome to August! The staff have been in training this week, and today was their big breakfast, so I went in early to cover the office so they all could go. I am glad I went in this morning, but after treatment, I was even happier to go home, have a leisurely lunch, run some errands, and check in with my stylist to tame these cute little tufts that are forming all over my head.
I’m at the point in my treatment where the end is in sight. So even though I still feel fatigued and itchy and constantly on the verge of infection (I’m assured I’m fine – it’s just part of the fatigue – but I’m taking a ridiculous amount of vitamins and treating it like a precursor to a cold anyway), I’m starting to notice again how much I’m missing out on by just not having the energy to do more than the bare minimum.
I don’t subscribe to a lot of paid Substack accounts, but Roxane Gay’s posts are well worth the small fee I pay each month for it. I get access to her book club discussions, and essays on things like learning to write again from a seasoned writer and educator. I feel like I’m learning to write again as well. I’ve been journaling, but it’s not the same as losing myself in fiction or poetry, and I’m pretty rusty. It’s been a bit of a slog, and I’m grateful to hear that this, too, is common and overcomeable (a word? I don’t think that’s a word. Welp, it is now).
Here are some other things I’ve enjoyed reading this week:.
It is so hard to find a therapist. I feel this post in my soul. Dr. Chanequa Walker-Barnes is one of my main go-to sources for practical advice when it comes to self-care and rest. She echoes a lot of my own struggles in this piece.
I love Joy the Baker’s team and their Let It Be Sunday posts, and this past Sunday’s edition was especially good. I particularly enjoyed the pieces on how to cope with the social exhaustion of work (and I have needed these tips this week with all the training) and tips on travel (which is something else I may be interested in as I come out of my treatment fog. Maybe. We’ll see. Got some ideas for my birthday next March.).
Mountain Ash Press is having a submissions contest. I don’t project having a manuscript that’s ready to submit by August 31 myself, but if you do, check it out and see if it’s a good fit!
I love the post from Modern Mrs. Darcy about one of my favorite mystery series. If I were to name a place in literature I’d like to visit, Three Pines would be at the top of my list. If you haven’t read any Inspector Gamache, here’s a good Louise Penny Starter Kit for you.
I hope that your week has been OK and that you have a good and restful weekend. Take care, friends!
This week was a lot. First week back to work after surgery, and it went pretty well. We had two Freshman Orientation sessions this week, so our team was running around everywhere between tabling, talking to parents, giving tours, and answering the phone that kept ringing off the hook. And next week’s schedule looks the same.
So this weekend is all about relaxing! I’m gonna DoorDash some dinner tonight (and maybe breakfast tomorrow, too) and read to my heart’s content. Well, read until I fall asleep. I am not sure there are enough hours ever to fully reach my heart’s content when it comes to reading.
Links for this week:
I finally broke down and started a GoFundMe for my medical expenses after learning how much I would have to pay out of pocket for my upcoming radiation treatments. But this is the last major phase of treatment – it’s all just ongoing prevention and checkups after that!
I’m very excited for my friend Andi who recently signed a contract with a publisher for all her books! I also really like her YouTube channel.
Lessons in Chemistry is one of my favorite books I’ve read in the last few years. Easily top five. This interview with author Bonnie Garmus makes me love it even more. Success really is the best revenge.
Welp, I did it. I subscribed to Archer and Olive, and I just got the notification that my June box was delivered. So I have that to look forward to later this evening!
Finally, I love the Quiet Life community Susan Cain has created, and one of the neatest things they do is the community art project.
The past few years, I’ve made a summer bucket list. Mostly, I’ve done it because I have to talk myself into liking summer as a season because it is so, so hot in Texas and that’s the worst. It also keeps me more grounded in the present instead of always focusing on future plans. And of course, making these lists is also a good way to check in with goals to either make sure I’m on track or get myself back on track.
So why not do that with every season?
Here are some things I want to do this spring.
Buy fresh flowers. I have received so many flowers this year, and it’s been lovely. I mean, some of them have made me sneeze and thus had to live elsewhere for a little while. But I really love seeing fresh flowers when I come home. Bonus to picking out/buying them myself? I know I’ll get what I love and still be able to breathe normally.
Plant citrus trees. My friend Jessica gave me a bunch of citrus seeds, and soon (this weekend, maybe?) I’m going to plant them in buckets to see if they come up. I’ve already got the pots and the soil, so all that’s left to do is plant!
Drink tea and read when it rains. It rains so much this time of year, and I don’t take advantage of that nearly as often as I could. A cup of tea and a good book are excellent accompaniments to a chorus of rain. It’s my ideal quiet morning/afternoon/any time.
Play springy playlist when cooking. Cooking is relaxing to me, but lately it’s been mostly a utilitarian, get-in-get-out, cutting-corners process. I want to reintroduce my former habit of playing music to set the mood and make cooking more fun. I have all sorts of playlists for this already (brunch, spring, etc.); it’s just a matter of remembering to put one on when I start.
Get my feet ready for sandal season. I often neglect my feet during winter. I’ve been doing better this year out of necessity (the neuropathy side effects of chemo are no joke), but I still want to give them a little extra TLC before I expose them to the elements with summer footwear.
Re-establish my strength routine and take some long walks. My back seized up for the first time ever last week. Clearly a sign that I’ve been slacking on my core strength. Or that I’m just getting older. But a solid strength routine and regular walks can only help with both physical and mental health, so I want to make both a priority again.
Visit the Denton Community Market. This is the best place to get local, seasonal produce. Also, it’s just one of my favorite things Denton does. Bonus to going in spring rather than summer – the weather outside may actually be bearable.
Life seems to be plodding along lately. I am not doing a lot of things I’d usually do because I don’t have the energy (and also there are so, so many germs out there that my body just can’t handle being around right now). My treatment has hit a small hiccup (delayed due to concerning lab results – nothing too drastic or out of the ordinary, I’m assured), and that’s frustrating.
But I’m getting through it without too many terrors, so I guess that’s something.
This weekend, I participated in Dewey’s 24-hour Readathon. And by participated, I do mean read sporadically and fell asleep a lot. I finished one of the books I started, though, and I’ll probably finish another tonight. I don’t see me finishing the book for book club by tomorrow. It’s a long one, and while I started it last month, I haven’t been reading consistently so time got away from me a bit.
The whole weekend was so relaxing. I even got some journaling in, and I remembered my word for the year.
Quiet.
In many ways, it has been quieter simply because I’m doing less and staying home more. I’m even doing less when I’m at home. I still clean and work on projects but in much shorter spurts. I haven’t had the attention span to read as much as usual. I’ve decided that while I’m still going to try to complete some of my reading challenges, writing reviews for each book I do read is probably not a reasonable expectation this year. So it’s been quieter here, too.
But when I do leave home, everything is so intense.
I’m not just going to work; I’m rushing through getting things done because I’m out so much with appointments and don’t want to miss anything important. Also, my office is moving (again) into a louder part of the office (again). One day, I’ll actually get to settle into this position and feel like I have my head on straight. I hope.
I’m not just getting regular check-ups but intense treatments that make me feel puny, and that affects every other aspect of my life.
I’m attending very few social events, but I feel way more social than usual because I’m trying to keep people informed and constantly answering questions of “How are you doing?” and “How can I help?” which are very sweet questions to ask. I do miss, however, having conversations about literally anything else. I’m so tired of talking about myself (which I realize may not be believable given that I’m currently doing so on the internet but…you get it).
What I want to explore this week is carving out quiet spaces in the chaos. I want to turn my new office into a calm area where I can be productive without getting overstimulated. I want to give myself buffers around my appointments so that I am not just darting to them and rushing back but having a chance to process (or just breathe) a little before I jump right into the next thing. I want to be bolder about changing the subject when I can’t possibly fathom talking about my body or my needs for one minute longer. Simply ending these conversations when I need to is also a good alternative.
I enjoy solitude and quiet time, so while this is a challenge, it’s a welcome one. In fact, I think it’s just what I need to get myself back to some semblance of what I meant this year to be.
My good friends Maggie and Michelle are coming into town today and spending my birthday weekend with me, and I’m so excited!! We are going to eat cupcakes, binge-watch comfort TV, and just bask in each other’s presence all weekend.
Up until very recently (i.e., a couple of days ago), I have been operating under the assumption that I will have the energy to do everything I really want to do. I mean, I knew in my head that this was not probable. But I cling to the idea that I’m extraordinary. Well, I am. Extraordinarily sensitive to treatment in that I have had almost every one of the milder side effects of chemo so far. Apparently, that means it’s working, so I’ll take it. But still.
Could it also mean that maybe I don’t stretch myself to the very end of my energy every single day? I think so. I think that would be a good thing to stop doing. Every week, I find more and more that I usually love to do that I just don’t have the energy for, and that’s going to have to be ok for now. The things I love will still be there when I’m well.
In the meantime, here are some things I love that take relatively little bandwidth.
Oh, gosh. Ruth Reichl, Laurie Ochoa, and Nancy Silverton have a podcast together. It’s called Three Ingredients and I am obsessed (with a PODCAST?! I know, right?!).
Five ways to trick yourself into decluttering. The timer works really well for me. I can do anything for five minutes, and I can get a surprising amount of things done in that time.
Dorie Greenspan has a new book coming out, and it’s about simple cakes. I feel like I need to pre-order it, because simple cakes are my favorites. Give me anything I can throw in a bundt pan and maybe not even ice, and I’m happy.
My writing is hitting a slump, so I’m going to refresh a little next week with the Healing Through Writing Festival. It’s all online, and most of the sessions are free. You can upgrade for a pretty reasonable price to get All Access, but per my energy level, I may just need to stick to the other sessions. But if you are a creative and need a boost, too, you may want to check it out. The presenters I recognize are top-notch, so I’m excited to learn what everyone else has to say.
Finally, a very helpful product that my friend Steph introduced me to. My skin has been so sensitive – to heat, allergens, etc. More than usual, I mean. It is a mess. Enter Active Skin Repair Hydrogel. I can put it on cuts, burns, allergy rashes…anything. And it soothes and heals. It has been a godsend and if this product were a person I would marry it. Highly recommend if you are similarly afflicted.
Edited: At the community vigil in Owasso, Nex’s friends confirmed that he used he/him/his pronouns with friends and they/them at home. I have updated this post to reflect how Nex is known among his friends.
It’s been a hard week personally. Long saga, but the gist is the chemo port was successfully placed but they did not put me under during the procedure so I’ve been dealing with the fallout of that trauma (it took a full day and a half of “I’m fine everything’s fine it’s ok” to finally call it trauma, just in time to have a meltdown about it when I had labs done on Wednesday so maybe we journal more consistently and maybe make an actual appointment with the nice therapist soon). But some good news – no spread to the uterus, so that was a huge relief.
And after the excellent care – physical, emotional, and mental – from the awesome team at Texas Oncology and some much-needed social support from friends over the course of the week, yesterday was much better. But I’m still exhausted.
This is, of course, added to the heartbreak of the ongoing updates on the death of Nex Benedict, the trans student who was murdered by bullies in Oklahoma this month (full disclosure – I have no energy left for diplomacy and I don’t see that changing this year while I’m undergoing cancer treatment, so buckle up – we’re going to be blunt and call things what they are around here for the foreseeable future…and maybe longer if I discover I like it as much as I suspect I will).
If you are similarly heartbroken, make sure you are taking care of yourself extra this week. If you are trans or nonbinary, I want to tell you what I can never say often enough – your life and your right to just fucking exist in peace are important to me. If you are not heartbroken, do some soul-searching and examine why (I’ve put a few resources below if information will help). I say this especially to people who share my faith, because the God you follow is heartbroken about the horrific treatment and negligence that led to his death, so either return to said God and repent your hard-heartedness or start being honest about what spirit you are actually following, because it’s not a holy one. Also note that sometimes repentance starts with donations (see below).
Not just a problem here (which absolutely does not negate in any way that it is a problem here, so take any what-abouts you may be tempted to entertain and throw them in the garbage where they belong – that it’s also awful elsewhere obviously means there’s more work to do, not less) – JAMA Network
The VAWnet project from the National Resource Center on Domestic Violence
Btw, these sources were found by a Google search of “statistics on trans nonbinary risks” and, when that pulled up mostly .org sites (i.e., usually solid, accurate studies but also often called out for being slanted, as every organization inherently has an agenda simply because it exists to further a certain cause, which naysayers like to point out, forgetting that their own pet organizations also have agendas because that’s what organizations do /rant), I spent a little extra time vetting before adding them to the list. Then I added a second search of “statistics on trans nonbinary risks site:edu” (i.e., typically the most heavily scrutinized studies) to supplement. All of this took ten minutes, so take heart that it’s pretty quick and easy to find more good info if you are looking for it.
Search “trans and nonbinary blogs” and you will find a treasure trove of people who are putting their own stories and experiences out there to help people better understand (usually free of charge, which is incredibly generous, given how much emotional labor this level of public vulnerability requires. That being said, it would be appropriate to donate if they have a button or widget installed to do so.). The stats can give you general facts, but these personal sources are the ones that have had the greatest impact on my own empathy and understanding by seeing how navigating the world affects specific people.
If you are reading and you have sources you want to add, please do so in the comments (especially if you want to share your own blog and stories). Sources that sympathize with aggressors or pose arguments that trans/nonbinary or LGBTQIA+ in general are not real identities will be deleted. Those are not valid viewpoints on this issue, and I am not making room in my online space to pretend that they are. No exceptions.
I am angry, but I am not angry with you (unless you happen to be a Texas or Oklahoma lawmaker or school board member. In that case, every single one of you is on my list. Do better. Tell your little work friends to do better. Do it now.). Okay, fine. Here’s a little diplomacy. Enjoy.
There’s only so much rant a journal can take before it has to leak onto the internet. So here we go.
Before my cancer diagnosis, I hadn’t had any major medical issues, at least in a couple of decades. I’ve been very lucky. I went through some gastro issues that landed me in the ER a few times in the late 1990s and early 2000s, but I don’t remember the billing process being this draconian. Maybe I’ve repressed what happened then, or maybe this is unique to the type of insurance I have now, but I absolutely hate the way the way some of my billing is being done. There’s got to be a better way (in fact, I have a few really obvious suggestions, and only one of them involves my middle finger).
For most of my office visits, I can pay the copay ahead of time, and that’s great. Sign me up. The less I have to deal with when I’m actually physically present in the doctor’s office (and thus more anxious), the better. And the more I can deal with any financial thing without having to talk to someone about it at all in any way, the better. Send me an email or text that you have billed my account, and that’s all the interaction about money I really need. Ever. I will log in and pay the bill in a timely manner.
But this bullshit of sending me emails saying, “Your estimate is this and you need to pay it before your procedure” is not okay.
First, I am not comfortable forking over any amount of money for what they guess the bill might be. Especially since, in the short time (i.e., a little over a month and a half) I’ve been dealing with this particular issue, they’ve already been wrong twice and had to refund me. Which took weeks. WEEKS. I can’t help but notice that it certainly didn’t take weeks for it to come out of my bank account, so I’m curious as to why it took that long to get it back in there. I should have chargedtheminterest.
The estimate should be presented to me purely as information to give me more notice of planning how to pay what will likely be my future bill. That’s it. That is the only function the estimate should ever serve.
I am incredibly fortunate in that my dad is taking care of most of the larger bills, and I’m also looking for grants and loans to minimize what he pays, because it’s so, soooo much, even with “good” insurance. But if I had to handle this on my own, making these payments would not be a possibility. And I don’t know many people who just have extra thousands lying around. What do they do? I mean, I know hospitals write off a lot, but how much pressure do they first put on patients who are already scared they might die before they do that? Like…maybe people who are terrified about their lives don’t need the reminder that they are also only a couple of missed paychecks or huge bills away from being homeless.
It’s all just so horribly heartless.
What should be happening is this – I should only be paying the actual bill. That is, I should only be asked to pay AFTER the procedure and AFTER they have already filed with insurance and have put every single thing they’re charging on that claim because it definitely won’t get covered if they don’t even ask. I shouldn’t even hear a peep out of them until they can tell me for certain what I actually owe.
[Aside…as long as we’re talking shoulds…it all should work like it looks like my chemo treatments are going to work (i.e., insurance is covering 100% – I was so relieved I cried and hugged the financial advisor right there in the lobby). I shouldn’t be paying out of pocket for necessary, life-saving care at all and wouldn’t be if healthcare in this ridiculous country wasn’t a fucking for-profit industry but instead was recognized as the basic human right that it is (as it is in every country in the world that is actually as free and civilized as we brag about being), but that conversation is a whole dissertation and beyond the scope of this post.]
But all other things being equal, if I must have out-of-pocket costs, the bare minimum I should be able to expect is that the bill be accurate. And the only way to ensure that happens is to bill once all is said and done.
Also, I want an itemized bill to be standard practice. I should never have to request it. That I have to ask them to detail what the large amounts of money I’m shelling out are paying for is unacceptable.
Also not okay – having a credit card machine on the desk in front of me as I’m getting information about what is about to be done to me. A monument, if you will, to putting a literal price tag on my life. Or, in the horrifying incident when I went to the ER for my concussion in November, having the credit card machine wheeled in via a cart to the bed where I was already hooked up to the machine monitoring my vitals so that they could get their money before they took me in for the head CT they had just told me I needed. The implication that payment was more important to them than actually getting the answers they needed to treat/advise me (or perhaps even save my life) was more stressful to me than the possibility of having a brain bleed.
I know I’m extra sensitive about financial things, but I imagine a lot of other people slugging through this capitalist hellscape we live in are, too, and for good reason. Why – WHY – would so-called care providers of any kind and at any level think it’s a good idea to make the process more stressful than it has to be?
They need a communication consultant to help them fix this problem. And by a communication consultant, I do mean me. Pay me to identify and fix all these issues that, while obvious and shocking to me as an outsider/patient/customer, are probably so commonplace to those working there that they don’t even notice it happening anymore.
And pay me A LOT. Because I have a crap ton of medical bills to cover.
M. Suzanne Terry 